my surgeon moved :(

[blondeballerina07]

My first surgeon Dr. Rekate moved and will be taking over as the chief at the Chiari Institute. He is a great doctor and I am sure will do wonders over there, but I am from Arizona and New York is a long way to travel to continue seeing him. Based on the turn of events I was referred to two other doctors a little closer to home. The first is Dr. Oro which I have seen so many great things about him and have set up a consultation with him in six weeks. The other is a doctor at UCLA Dr. Batzdorf has anyone had any experience with him? He is suppose to be an expert and is doing chiari research, but I wanted to hear any thoughts or opinions.

Thanks :D

[selmaS]

  I know it is my Dad that has it, and I know my sisters have it too...just a matter of getting everyone to get checked....

[blondeballerina07]

EDS is a dominant condition so one parent must have it to pass it on.

[Rylanesmom]

Selma my Mom I believe has it too.  She also had the knees that went backwards that now have been replaced.  She has the droopy top eyelid and horrible disfiguring arthritis.  After we left Dr Oro I Told her I think you have that too...

[selmaS]

I should have added, I believe my dad also has it, and he has heart issues which fits with the  one type, I had my heart checked and so far it is ok, but the biopsy may show if I have it and just not the heart issue.....

[selmaS]

  I was told hypermobility, but I need the biopsy....have not gotten that far and another reason I have pushed my TC release back, I want more info b4 I have more surgery.

[blondeballerina07]

I am curious what type do you two have?

[blondeballerina07]

Thanks I will ask about it and look into finding a rheumo. I have no time left in my days with all these doctors appointments, testing, phone calls and scheduling stuff. ey yi yi!!

[selmaS]

  Once u r clinically dx'd yes, they will do a skin biopsy.

[Rylanesmom]

Selma is that the skin biopsy that tells the type? Since I now know I too have EDS I am curious what that testing looks like.

[selmaS]

  I had several surgeries and the last 3 I had meds I could no longer take, and found it is bcuz of EDS we can become intolerant or meds lose effectiveness....u do not want to be post op and pain meds do not work, and find out something else about the EDS, it is best to figure it all out first....JMHO.

[blondeballerina07]

Is that something I should do?

[blondeballerina07]

Why would I have to get the genetic testing before another surgery. Before my last two they knew about it and did not make me do the testing. They did an ultrasound of my heart to make sure my heart was not affected and Dr. Rekate took multiple precautions and talked with a few rheumatologists who focused on EDS.

[selmaS]

Join the group....like I said this Dr in MD is doing a diff approach to TC release for those with EDS so I am waiting to see what else I can find out, and  if there is nething else I need to know....but, a good rheumatoid Dr would be best, as u have to get ur EDS dx  b4 u have another surgery....

  

[blondeballerina07]

I have EDS as well, but have never had the genetic testing to determine what type. I have the sacral dimple and an elongated brain stem. Wow the list is long I am a mess.

[selmaS]

  Oh, ur wording made it sound like he just left and  so I thought u just found out....

TC will pull the tonsils back down, and when it does u have to take care of the TC....I am in the same boat as u...my TC release was back burnered as I have to be careful with EDS as it  will most likely re-tether....there is a Dr in MD that handles TC release diff and takes EDS into account and I am researching b4 I do nething.

May I ask, do u have the sacral dimple?....and is ur brain stem elongated?

    "selma"

[blondeballerina07]

I was aware that Dr. Rekate left I just thought I was done with neurosurgeons at the time and now I wish he was back. Everything was going great after surgery but then for some reason my brain started to herniate farther, it has been watched since July and has continued to move down so I am back looking for opinions on what to do. Secondary to this is I recently found out I have tethered cord after my kidneys began to fail. I know most ns are qualified to handle this but if I would rather have it done at once than two different surgeries.

[Rylanesmom]

I spent the past 3 days in Colorado and saw Dr Oro.  He was very thorough and his entire team was wonderful.  I have not had surgery for decompression yet but I am very pleased with my new Doctor:)

[selmaS]

  Yes, that move was last Jan. when it was announced......I guess u were not aware of it.....

I met Dr Oro and he is very nice, and I have heard of Dr Batzdorf as well...both are well regarded in the chiari field.

  Sorry I have not had a personal experience with either...except a short conversation with Dr Oro....but it is best that u talk to both to see which u r more comfortable with.

   May I ask what is going on, since u had surgery/or saw a surgeon...and u r looking to see another surgeon??

    "selma"